We need your input on a very important decision

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Vonna » Wed Mar 03, 2010 6:27 pm

Okay, I have worked on a business card.

You will notice that I only have one web address on the card. The address is to a page full of helpful links about CCSVI. I plan to rearrange the links to include the most helpful at the top.

I went this route because I found so many great links, there was no way to list them all, and I was sure to leave someone out. If you have a link that should be on the resources page, let me know.

Also, I have included two pictures on the card that I have pulled from the web. I expect these to print properly, but will have to find out for sure. I need permission to use these pictures before I can use them.

One came from Dr. Haake's website, but was originally done by Dr. Zamboni. Does anyone know who's scans these are and how we can get in touch with them?

Also, I am going to have to research where the other picture originally came from in order to get permission to use it. Do any of you know, or are you willing to help me find out?

I'm interested in getting these items up for purchase ASAP, so all help would be great!

Please check out the business card and give me your feedback on the wording. Try to see it from the perspective of someone who is just learning about CCSVI.

http://ccsvivictory.club.officelive.com ... oIdea.aspx

Scroll all the way down to the bottom.

Vonna
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Postby bohemianbill » Wed Mar 03, 2010 6:37 pm

Vonna, you hit it out of the park on the first swing, great job.

Did you see my email re the T shirts

Thanks

BB

keep the heat to the feet
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Postby Johnson » Thu Mar 04, 2010 1:28 am

Thanks for your comments, Bill, mech., and Vonna.

mech., with your handle, I am not surprised that you liked the hardware. Grin.

I'm not married to this pic. - it is in a different neighbourhood to Vonna's work - but I had some feedback, and tweaked it a accordingly (I hope). It might be better at Lollapalooza than the CCSVI/MS Walk, but I still gotta share...

I had some drifting thoughts around this image, the history of MS, etc. I thought that the Gray's Anatomy, meeting modern hardware, was analogous to the venous theorem (Putnam, and so many others) - that has been trammeled by Big Bucks Pharma (immune theorem) since - meeting modern imaging.

Sorry to go all art school cerebral (pun intended), it's just my mind.

edited to remove image - so that it doesn't keep stretching out the posts.
Last edited by Johnson on Sat Mar 06, 2010 2:06 pm, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
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Postby esta » Thu Mar 04, 2010 9:21 am

vonna
you worked a miracle in a week :D :D :D :D :D . this work is absolutly awesome. god bless you!! just wish i had half your ability...
you can tweek it as we get bigger, but for now, to get all this going, i think you've done the best!!! if you have trouble getting permission for the pics, on the business card, get sammjo's or someone on this site who would love to be part of this and show their veins....or, just list more websites??????????????
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Postby jilthepil » Fri Mar 05, 2010 12:17 pm

Hey Vonna. I haven't read the thread in its entirety. You know I am game for whatever. Sign me up as someone who will help in anyway possible. :)
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Postby Vonna » Fri Mar 05, 2010 8:52 pm

esta and others,

Back of Shirt-Because of valuable input from several people, the back design has been changed. I feel it has certainly changed for the better. Thank you all for your input!

http://ccsviworldwidevictory.com/CCSVILogoIdea.aspx


Here is something you may all want to copy and paste to send to your group (feel free to change it up any way you like):

_____________________________________________________________


CCSVI Worldwide Victory and CCSVI Victory Canada have some very exciting news!

You may have already heard, but we have been working very hard on a project to get the word out to the public about CCSVI.

A number of people have agreed that a very good way to do so is by attending MS society walks, and other fund raising events. The plan would be to wear T-Shirts advertising CCSVI. The shirts are light blue, and the color scheme is completely different from the MS society color scheme. It should really stand out, and prompt people to ask questions! We will have business cards available to pass out to everyone, and a one page flier explaining CCSVI in such a way that encourages people to go home and get online to learn more. Here is a link to a discussion about this: http://www.thisisms.com/ftopict-10457.html

Some have expressed that they will not attend the MS walks, and we respect this. These people are encouraged to wear their shirt and pass out literature the day of the walk, or other event. These shirts are also great advertisements for CCSVI any day of the year!

We are looking for "CCSVI Educators" to volunteer and organize groups in their area, and promote this project. Please check out these links and let us know if you can help. We will be listing Educators soon, as we have already had quite a few express their desire to be involved. A united effort in this will make a huge statement to the public, and it is likely to get some media coverage as well!

Walks for Canada: http://ccsviworldwidevictory.com/CanadaMSWalks.aspx

Walks for US: http://ccsviworldwidevictory.com/United ... Walks.aspx

We have negotiated a very, very good price for the T-shirts as long as we make the order in bulk. Other companies gave us quotes of $21.00-35.00 for an individual shirt.

As an added benefit, CCSVI Worldwide Victory and CCSVI Victory Canada will earn royalties on every shirt!

That is, if we can reach the 1,000 shirt order minimum.

This will help us to:

1) Reimburse costs of non-profit organization
2) Advertise CCSVI awareness in a number of locations such as google, facebook, sites that doctors and/or MS patients frequent, etc.
3) Advertise opportunities that are not internet based such as billboards, newspaper and magazine articles, etc.
4) Purchase awareness products such as banners, pens, cards, fliers, misc.
5) Give to research

$3.00 of every Canadian sale will go to CCSVI Victory Canada.
$4.00 will go to CCSVI Worldwide Victory (Please keep in mind that an expedited, quality 501c3 is $1,500)

The only way we can negotiate this low, low price is by making a bulk order. This company is willing to collect individual orders for a specified amount of time, then base the price of the shirts on how many shirts are ordered. The more shirts that are bought, the more funds available for CCSVI awareness, etc.

Even if we don't reach this goal, you will still be able to purchase the shirt for $12.50, however CCSVI Victory Canada and CCSVI Worldwide Victory will not reap the same benefits.

Once the initial order minimum is met, this company has agreed to keep shirts in stock so that individual orders can be made. This means, there will be no ten day production time that most companies require!

If you are interested in purchasing these shirts, please simply e-mail me to let me know. My email address is CCSVI@live.com Include how many shirts you are interested in purchasing. This way, I can let you know when it's time to order. (One week or less) We need to begin now to get an idea how many are interested, in order to speed up the process, and get these shirts out to people ASAP.

I believe the more people that are wearing these shirts, the louder our voice will be.

Here is the link to get an idea how the shirts will look: http://ccsviworldwidevictory.com/CCSVILogoIdea.aspx

Thank you so much for your time,

Lavonna

P.S. If you are not in Canada or the US, there is room for everyone! We just need your help!
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t shirts.

Postby msscooter » Sat Mar 06, 2010 12:10 am

great job vonna I will order 10 shirts.
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Postby Vonna » Sat Mar 06, 2010 12:16 am

Awesome!

If you don't mind, please email me at ccsvi@live.com with this information as well. I am putting this information in a folder so I can keep up with it, and email you as soon as the online shopping cart is set up.

Thanks!
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Postby esta » Sat Mar 06, 2010 11:07 am

Hi Vhonna
I have e-mailed our local chapter coordinator to see if this information cang get entered into the newsletter that is imminently going to be published. We may get hundreds of orders,I just have to wait for an answer.
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Postby Donnchadh » Sat Mar 06, 2010 11:20 am

Johnson wrote:Thanks for your comments, Bill, mech., and Vonna.

mech., with your handle, I am not surprised that you liked the hardware. Grin.

I'm not married to this pic. - it is in a different neighbourhood to Vonna's work - but I had some feedback, and tweaked it a accordingly (I hope). It might be better at Lollapalooza than the CCSVI/MS Walk, but I still gotta share...

I had some drifting thoughts around this image, the history of MS, etc. I thought that the Gray's Anatomy, meeting modern hardware, was analogous to the venous theorem (Putnam, and so many others) - that has been trammeled by Big Bucks Pharma (immune theorem) since - meeting modern imaging.

Sorry to go all art school cerebral (pun intended), it's just my mind.

Disclaimer: I never went to art school.

Image


Great image, but.........

the valve is placed on an artery, not a vein! That's important since CCSVI is about venous problems. Otherwise, great image.

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Postby PCakes » Sat Mar 06, 2010 11:58 am

Amazing job Vonna, I wil place an order for sure, and will e-mail quantity asap.
I also like the wristband idea.. always good to start a conversation and can be worn at times when a t-shirt might not work. I saw this on another post.. face book i think... there was a discussion on colour.. 2 cents..would be good if it matched your t-shirt design?
Thank you for all your work..!!
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Postby Katie41 » Sat Mar 06, 2010 12:46 pm

Vonna,

Terrific designs! I would like to order 10 adult t-shirts when you are ready to take orders. (10 adults and 6 kids, if you will have kids' sizes) 16 total.

We can wear them at the Irvine, Calif. Walk-a-thon on April 10th, if they are ready in time. Otherwise, we can wear them anytime.

Thanks for your inspiration and hard work.

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Postby Johnson » Sat Mar 06, 2010 2:04 pm

Donnchadh wrote:
Johnson wrote:Thanks for your comments, Bill, mech., and Vonna.

mech., with your handle, I am not surprised that you liked the hardware. Grin.

I'm not married to this pic. - it is in a different neighbourhood to Vonna's work - but I had some feedback, and tweaked it a accordingly (I hope). It might be better at Lollapalooza than the CCSVI/MS Walk, but I still gotta share...

I had some drifting thoughts around this image, the history of MS, etc. I thought that the Gray's Anatomy, meeting modern hardware, was analogous to the venous theorem (Putnam, and so many others) - that has been trammeled by Big Bucks Pharma (immune theorem) since - meeting modern imaging.

Sorry to go all art school cerebral (pun intended), it's just my mind.



Great image, but.........

the valve is placed on an artery, not a vein! That's important since CCSVI is about venous problems. Otherwise, great image.

Donnchadh


Visual impact was the goal. 95% of people would not notice the anatomy. Artistic license...
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Postby Vonna » Sat Mar 06, 2010 2:27 pm

Donnchada and Johnson,
I thought the same thing, arteries are depicted in red, veins in blue. The image is very catchy though, and I would love to see it done where the valve in placed on the vein. I do think it would be best to be "scientifically correct" as we don't want to be viewed as unknowledgeable. Certain people could jump on this and and say we have no idea what we are talking about.

Katie, thank you for your order. I am glad you are posting here so everyone can see how it is going. The orders are coming in steady! If you don't mind, please also email me with this info. I am putting all this feedback in a certain folder so that I can easily keep count. Thanks! Lavonna ccsvi@live.com

PCakes, I'm not exactly sure what you are asking. The color of the wristband, or the color of the online store?

Thank you so much esta, very encouraging! Keep me posted.

At the moment I am sitting on the side of the road in the heat!! We came to Houston (two hr. drive) to visit a sick friend. Our motor blew, now we are waiting 3 hrs for a friend with a trailer to come pick us up! My head is pounding, but I had to check my email and see how things were going. I am picking up a signal from a nearby hotel. I am getting offers from various states to help, just got another for Oklahoma. What I really need is someone for the US who will coordinate all states. I have helpers, but I'm finding it hard to direct everyone on what to do. Only so much time. We are working on an Educators toolkit, and this will help, but I still feel US is lacking in organization. I need someone who can keep in touch with coordinators in US as this thing is getting bigger, and my time is going so many places! I just had an offer from someone who wants to be the Educator Administrator for the whole Continent of Asia! So, it looks like we will have CCSVI Victory Asia!

If you know if anyone willing to take on the US, let me know... :D

Right now, that job mostly consist of emailing and things you can do from home. Getting the word out and coordinating.

Vonna
Last edited by Vonna on Sat Mar 06, 2010 2:29 pm, edited 1 time in total.
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Postby Katie41 » Sat Mar 06, 2010 5:27 pm

Tried e-mailing CCSVI@live.com or ccsvi@live.com, couldn't get link to work either time. Any suggestions? Anyone else having difficulty?
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